Life and Lyme

Muddling Through Life with Lyme Disease

I try mightily not to be judgmental. In the effort to put myself in someone else\’s shoes, I fail most miserably with myself. Some of the ridiculous judgements I make (only with myself): should you be doing this? Why aren\’t you doing that? Do you really feel that bad? You\’re just being [lazy, a drama queen, too soft, too hard, not serious enough, too serious] and more, every permutation a judgment on me.

It\’s hard not to do this when you\’re always navigating a chronic illness. Chronic illnesses like Lyme are floaty ephemeral things, randomly disrupting your life in dozens of ways. That makes it less real and concrete, unlike, say, arthritis, or diabetes, or an illness like cancer. In these illnesses,  the causes of those diseases are measurable by tests and the core symptoms never shape-shift and morph on a whim.

And Lyme, along with its co-infections, may be chronic, but it is mostly—and I fucking hate this word— manageable. And so I judge. I look at people I know who have far deadlier and scarier challenges than Lyme and all of a sudden my ability to see things as they are for me vanishes.

When I get in a judgmental funk, I often second-guess what other people are thinking. \’Well, she was able to [swim, hike, write, clean, cook, shop] so she can\’t feel that bad,\’ \’She was fine yesterday. How can she be sick today?\’ Maybe they don\’t think any of these things, but I think they do. I tell my self to stop it, but I don\’t listen when I\’m in this kind of mood. Like an overtired toddler, once I\’m wound up, I can\’t unwind.

I tend to second-guess myself, too. At least twice a week for the past six years, I wonder if I really have Lyme. I wonder if I am relapsing at all. You\’ve felt pretty good for the past <day, week, month> my brains says. You\’re probably not sick at all anymore, just goldbricking. Cool etymology, goldbricking. Look it up.

That\’s when I catalog my current symptoms, the ones that make me doubt everything. Yet, they are the realest part of all. They may not operate on a schedule, but an aching liver, shooting pains in my teeth, a neck ache, sore feet, and muscle pains are concrete, solid things that, as much as I deny them, cannot be denied. Stoicism does not equal wellness. The other symptoms, like fatigue, or when I forget dad\’s phone number and address, or what day it is, are much easier to judge as non-worthy symptoms of illness.

And so I scrutinize, picking at myself relentlessly. It starts from the moment I wake up and assess how I\’m feeling. How bad is that headache I ask myself. Bad enough to not walk? You have to walk. I suppose if I am being generous with myself, I\’d say that this state actually gets me to do things, regardless of how I\’m feeling. I almost always begin the day charging hard, getting up early and getting as much done as I can. That\’s because it could all grind to a halt at some point in the day. I\’m okay with that if I\’ve managed to accomplish a few things before the crash.

This has been workable during COVID. We all seem to have had a collective fever dream where ordinary life has hung suspended from the pandemic. Being judgmental took a vacation as we struggled to deal with isolation and fear.

Now that most people\’s lives are slowly returning to \’normal\’, I\’m certain that the critical cacophony in my head will increase in direct proportion to my perception that everyone else is moving on. And I will respond with the urge that I have to work harder and do more, an insane reaction when I think about it. But that\’s just it, isn\’t it? My brain becoming mushy with a relapse, my body betraying me once again. I\’ll obsess about lottery tickets, fight the feeling that I am running out of time (for what, I don\’t know), and worry that I need to write and do things to prove I am worthy, even while I am sick.

My therapist tells me things like, \’be kind to yourself\’, and \’give yourself some credit\’. Easier said than done. I don\’t know why I\’m harder on myself than on anyone else. If I knew me, I\’d think I was handling a shitty hand pretty damn well. Maybe I\’m harder on me because I do know me: my foibles, weaknesses, and bad habits. Lyme has a way of exacerbating the bad parts of me and obscuring the good parts. I need to keep working on things that matter to me because I want to, not because I\’m struggling to define my self-worth outside of being a chronically ill person.

I have a feeling this is going to take some time. I\’ll probably stomp around on my walks muttering to myself, trying to figure out how to accept that who I am is not defined by my illness, nor is it defined by how hard I work to show that I am not ill. It\’s a stupid conundrum that is self-created. It will become one of those opportunities for growth that I have come to loathe.


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